madferrit's Journal

Not wrote recently so updating all that has happened. Recieved call from pharmacist on Monday, i will be getting Humira in 2 weeks!! I am so happy i cannot describe just how frickin happy i am.

    It's been so hard these past few months. I spend most of my time in bed writhing round in agony and unable to eat anything nutritous! If it has a smell i dont eat it- that would be way too adventurous!!

    Plus letting down friends is hard too, alot let me down as well which is even harder but i'm learning to just deal with it! Letting my kids  down is the worst of all i feel like such a failure if i cant do any of the activities they want to do. I feel like a frickin 90 yr old(dont look like one quite yet).  Plus lets face it- how unsexy can you look when your having accidents and look like you've been run over by a monster truck?

  I had a couple of ok days where i managed to stay up til 8pm but most days are a struggle. I couldnt make it to my friends house on Saturday, i rang her to let her know. She said it was fine but then kept asking when i was going round to hers. I asked if she could come to mine instead as it would be easier as she drives( and i could stay in my PJ's!)and i worry about accidents but she always comes up with some sad excuse as to why she cant make it. All my other friends understand why it's hard fro me to do visiting and they come to see me if i'm unable to go out. Not this one and now i find her just texting me but not relly making the effort to leave her house and see me. I wouldn't see her unless i went round to hers.We've been through this before and i was honest and said that i wasn't happy about her efforts to remain friends but she assured me she would make more of an effort but it just hasn't lasted. I didn't realise this was on my mind til i started typing!! I feel better for writing it down.I'm such a frickin moaner!

So now i await the phone call from the health group about my Humira. They will be delivering it every 2 weeks when i have to take it. My husband has all his hope pinned on this working, i'm a little more skeptical. I thought the Remicade was the magic cure but i was bitterly disappointed - i don't ant to set myself up for another fall but i'm still secretly hoping i'll have life i once led back.   

oh how annoying and frustrating is this waiting about? I was promised a phonecall on monday but i still havent heard a thing and i called them and left a message on wednesday!

      Diarrohea has now started and i'm barely able to eat a thing without it kicking off all my symptoms, so i find myself living off yogurts and rice crispies again and acting like a zombie because of the pain killers. Plus insomnia ahs started and even though i fall asleep i'm waking up an hour later and unable to drop off again!! It's just so weird.

      Good news is i've now got my sexy new laptop that hubby kindly bought me, so i can keep in touch with the world when stuck in bed. I spend so much time in my bedroom that we call it flat B!!! now all i need is a fridge......lol.Kids are being fantastic but i'm so pleased it's the weekend as i don't have to get up in the morning for school. It's been a real struggle just to get myself out of bed in the morning-it's ridiculous.Plus with all the long hours hubby has been working he's now as tired as i am!!! He said he forgot to takenight time insulin last night so he's really feeling it this morning, he didn't get out of bed til 1pm!!

            Made miced beef and onion pie for him and the kids, really fancied it myself but with diarrohea starting it's not such a good idea so had dairylea sandwich instead. My fantastic diet which i call the white diet as most of my food is white!!! Rice ,cereal, milk, yogurt ..... it's all very bland.

                        Hubby is planning to go fishing all weekend but has started to worry about leaving me at home on my own.It makes me so angry that he can't just go out and enjoy himself like he used to. I feel like a 90 yr old invalid!!! I've told him to just go and enjoy himself, if i need him i can always call jim as he isn't too far away. He said he worries that people might think he's abandoned me while i'm ill but i told him he still has to live his life and that includes getting away from it all and enjoying himself.|I cant complain, i get out to friends houses and i go to the pictures every now and then so i'm happy. Chest feels a bit tight today hope i'm not coming down with anything....

spent yesterday in bed again. This time was not only tired but plagued with nausea, it was so bad i had bucket next to bed all day!! I only managed to eat a bowl of cereal and some toast.Tried to snooze but was woken by kids, they were really good actually and they only wanted to tell me what they'd been up to.The nausea got worse as the day went on but i managed to get to sleep eventually. Managed to watch Dr Who which me and the kids love, even if it was in a haze of pain!!

  Felt much better this morning if not a bit achey.Got up and actually managed to get some cleaning done before i wore myself out. It was lovely and sunny so we all sat oputside for dinner. Didnt eat much though as i dont seem to have much of an appetite these days. Kids played outside and there i sat in the garden listening to music, i really enjoyed myself!!! Still feel very tired and generally worn out but i could forget about it all while sat in the sunshine ! now it's all beginning to catch up with me and i feel exhausted and ready for bed and it's only 6pm!! Good day though